Drs. can't diagnose my son

[psmint]

Last year my 16-year-old son was diagnosed with IBS by family physician with symptoms. Treatment: 4 imodium (immodium)/day & Citrucil. His bouts of diarrhea have increased dramatically over past 6 months.  Was referred to gastroenterologist mainly due to lack of growth. He only gained 1 pound in last year - should have averaged 12-15 lbs. He is 5'7" and weights 109. Has had every test known to man and still no answers for the diarrhea and lack of growth. Current treatment: Robinul 2 mg./2 x day, Citricul 2 x day.
One thing that was "abnormal" was his EGD. He had nothing to eat for 12 hours prior to test, but had a large amount of food in stomach. His diarrhea results upon waking and moving about and after eating. He has always said that whatever he eats affects him about 2 days later. His UGI and small bowel series took 3˝ hours and finally some soda to get the barium to move down to complete the test.
Is it possible that decreased gastric motility is the culprit? I posed this to the drs. and they dismissed it. At this point, he is supposed to "do the best he can." He has missed over 50 days of school and is so frustrated with this. I took him to the family physician last week because he has been out for another week and it was suggested that he should go to a behavorial specialist before they will refer for a second opinion. Help! Does anyone have any ideas or experience with this?

[PAJ]

I had IBS to the point of surgery ,all the docs said we don’t know what causes IBS live with it, the cause was a yeast infection “Candida “ it’s very common check it out sooner rather than later .if only to eliminate one possible cause. Also check for pathogenic gut bacteria .

[INALOTOFPAIN]

.....Son.....................yeast infection??? helloooooooooooooooooooooooo

[Concerned lady]

Dear PSMINT,

I agree with EVERYTHING the others said!

I have a few ideas for you, too:

(1)I think your son needs a really good, kind, patient, and thorough GI (gastro-intestinal) doc to help diagnose EVERYTHING that's going on with your son (maybe several things simultaneously).

(2)The pro-biotics idea is excellent! I recommend a type of beneficial bacteria called Bifidum infantum (related to Acidophilus). Get the powdered kind that has only rice maltodextrin (gluten-free and milk-free) mixed with the probiotic powder. This is found in health food stores, in a refrigerated section.

These pro-biotics can greatly help to get rid of bad yeasts, such as Candida albicans.

(3)Consider the possibility that your son may have food sensitivities, such as CELIAC DISEASE (a type of gluten-intolerance). There are blood tests and stool tests that can point towards him having Celiac Disease/CD.

Most CD patients have awful diarrhea, and they don't digest or absorb almost everything they eat, leading to a kind of starvation! (Some have constipation, but most have greasy, frothy/bubbly, bulky, floating, light colored, foul-smelling diarrheas)

You can experiment to see if he improves by going on a nutritious, GLUTEN-FREE DIET (for at least a month). This means avoiding all foods, beverages, snacks, etc. that contain gluten: AVOID WHEAT, RYE, OATS, BARLEY & BUCKWHEAT. Hidden gluten needing to be avoided can be found in restaurant (or school food) gravies, and even in vanilla extract, where the alcohol is a "grain" alcohol made from a glutenous grain!

You would need to "cook from scratch", and read labels carefully, to avoid gluten.

Some ancient forms of wheat need to be avoided, such as "kamut" and "spelt", because they contain gluten.

About 1 in every 200 persons has Celiac Disease, so it's way more common than most people (and even docs) realize!!!

BROWN RICE & CORN are gluten-free grains, but many people are allergic to corn, so avoid corn products temporarily. He might even need to avoid ALL grains, period, until intestinal healing takes place.

Millet agrees with some Celiac Disease patients, but doesn't agree with other CD patients, so avoid millet temporarily.

And, many CD patients have problems with MILK PRODUCTS, so avoid all milk products, until complete small intestinal healing takes place.

Gluten destroys the lining of the small intestine, in people who have Celiac Disease (gluten intolerance/sensitivity). As a result, until they go onto a gluten-free diet, a Celiac Disease patient does not digest food, and does not absorb vital nutrients. This leads to what is called MAL-ABSORPTION ("MAL" means "bad" in French), basically...starvation!!!

Going on a gluten-free diet IS THE CURE! and leads to HEALING of the badly damaged or destroyed inner lining of the small intestine!

For some excellent links to Dr. Fine's websites (he's a doc who specializes in Celiac Disease, and his own daughter has it), please go to http://www.braintalk.org  and find the "peripheral neuropathy" forum. Then, look for JCC's "thread"/topic about Celiac Disease and other FOOD SENSITIVITIES!

I wish you and your son the best! In case he might have an ulcer or gastric reflux, a good GI doc can help. And, I'll post some GASTRIC REFLUX TIPS (as the next message) that you can run by your doc, if this is part of your son's problems, to see if they are OK for him to try.

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com

[Concerned lady]

Some GASTRIC REFLUX TIPS (without acid blockers):

GER=Gastro-Esophageal Reflux. (Gastro=stomach. Esophagus=food tube.)

LPR= Laryngeal-Pharyngeal Reflux. (Larynx=voice box, containing the 2 vocal cords. Pharynx=throat, above the larynx. The larynx is above the trachea/windpipe.)

Reflux=acidic or alkaline stomach material that backs up into the esophagus (food tube), causing any of these problems: VCD attacks, cough, voice problems, asthma, globus (feeling of lump in throat), constant need to clear throat, worsening of sinus condition, sore throat, pre-cancerous conditions of throat &/or esophagus, etc.

SOME GER/LPR CONTROL THINGS WE DO, that we learned from the excellent book: STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, by Michael T. Murray, N.D. See page 9, References, in my website: http://cantbreathesuspectvcd.com   and, also see GER/LPR info on page 5, and on LINKS page.

PLEASE READ THIS GREAT BOOK. It may possibly be bought on-line, from Michael T. Murray’s website.

Some of the following we learned from people &/or other books, &/or other good websites about voice, GER, etc.

(1) DGL (De-Glycyrrhizinated Licorice) is one of our main methods of controlling the GER/LPR. We use Enzymatic Therapy brand, shortly before meals. The DGL does NOT cause high blood pressure, and does NOT cause fluid retention/edema, because the bad (steroidal) part of whole/crude licorice has been removed, leaving the DGL. DGL is available at most health food stores, and at good pharmacies.
  
The DGL tablet(s) must be chewed, to mix with saliva, to be effective. If it is too dry, one could mash/crush it and mix with a little water, and then chew it up. Chew tablet(s) for a minute or so, to thoroughly mix with saliva, shortly before EVERY meal, and if necessary, between meals (Read label directions).
  
The DGL seems to not only promote healing of throat, esophagus and stomach, but also seems to help prevent OUR reflux.(resulting in no more globus/lump in throat sensation, no more constant throat clearing, excess mucous, excess phlegm, no more NIGHT-TIME VCD attacks, no more laryngitis, etc. for us)

We like the taste of the DGL CHEWABLE tablets, but for those who hate the taste, try the chocolate flavored kind, without any mint. (Mint—in all forms, can cause gastric reflux episodes. AVOID MINT!!).

(2) We use Thayers brand of SLIPPERY ELM Throat Lozenges when we feel the need. (Soothing, coating, healing, nourishing). Slippery Elm (inner bark from a tree) also comes in teabag form, or in bulk, etc. as an herbal supplement.

(3) We drink the occasional small glass of CARROT JUICE (organic, fresh) which soothes, coats, heals the digestive tract, is nourishing, and stimulates the immune system, with beta-carotene, soothing and coating PECTIN (a type of fiber), and other good nutrients. (Carrot soup, cooked carrots are also good. Beta-carotene is heat resistant.) (Beta-carotene later is turned into Vitamin A inside us). Don’t overdo. If your skin turns orange, cut back on the carrot juice. Avoid beta-carotene pills—too potent.

(4) We tried elevating the head of the bed a few inches, by putting 6 inch to 8 inch BLOCKS, ON THE FLOOR, under the head end of the bed. This creates a slant (tilt), where one’s head is 6 to 8 inches higher than the feet. This helps some people, but not all people. (Check with a pediatric Gastro-enterologist, about raising the head end of a bed of a child, or a crib of an infant). Also, see (16) about a special GERD PILLOW, for adults.

(5) We try NOT TO BEND OVER too often, and we try to AVOID STRAINING (Valsalva maneuver). We AVOID LIFTING HEAVY objects. (No weight lifting!) (at least until after no more reflux symptoms for 3 months).

(a) If CONSTIPATION is causing any straining, see Ref.15,18,23,24,25 on page 9 for ideas about gently treating constipation, including eating whole grains, not white (de-natured ones), etc.  For us, exercise, increased water intake, acidophilus/bifidus, digestive enzymes, avoiding junk food, improved diet, chewing slowly (takes will power!), eating when not under stress or angry, etc., all are helpful.

(6) NO MORE TIGHT pants, belt, corset,--AVOID TIGHT CLOTHING etc.

(7) We try to not eat too much junk food. Some people avoid acidic  food, while others need to eat acidic food, if their stomach is not producing any (or enough) acid. (It is good to avoid acid, if one has an ulcer.) These gastric reflux tips methods often can help to heal ulcers. Some people need betaine hydrochloride supplements, which becomes HCl/hydrochloric acid, or, some use vinegar (acetic acid) in salads, or mixed with water, while others need to avoid eating excess acid. Each person is unique. We avoid all artificial sweeteners. Anyone with diabetes might want to look at the excellent book Reversing Diabetes, by Dr. Julian Whittaker, M.D..

Diet soda pop contains the harmful artificial sweetener Aspartame (Equal/Nutrasweet), which can cause WEIGHT GAIN, HEADACHES, UPSET STOMACH, BLURRED VISION, BLINDNESS, TWITCHING, SEIZURES, BRAIN TUMORS, HYPERACTIVITY, MOOD SWINGS, ETC., and soda pop often has strong acids, plus other harmful artificial ingredients. Plain water, gentle herb teas, certain fruit juices, brown rice-milk, etc. are healthier substitutes for soda pops.

We try to avoid all artificial ingredients, including fake fats (like Olean, Olestra, etc.), because these can destroy the digestive system, and prevent absorption of vital nutrients, such as fat-soluble vitamins (A, D, E, K) from foods. These fake fats also prevent digestion and absorption of needed fats & oils, used to repair myelin nerve cell sheaths (made of fatty material, mostly cholesterol). Hormones are also made of mostly cholesterol.

(8)  We try to drink more water, to prevent chronic dehydration. We like hard (nicely mineralized) well or spring water.
We do not drink distilled water (soft water, no minerals), because it can leach minerals out of our bones, possibly contributing  to osteoporosis. (See Ref.18,23, on page 9.) We avoid water softeners (chemicals) because they can be toxic, and because good minerals help keep us healthy. People with KIDNEY PROBLEMS &/or GLAUCOMA, etc. should ask their docs how much water is safe to drink, since too much water can be dangerous for them! (But, dehydration can cause problems also.)

(9) We use ACIDOPHILUS/BIFIDUS ( edible beneficial bacteria which keep bad YEASTS away, such as Candida Albicans, formerly called Monilia). ACIDOPHILUS/BIFIDUS also can eat or control some bad bacteria, and some viruses. The acidophilus/bifidus are also called PRO-BIOTICS and are beneficial intestinal flora (mainly for the large intestine). We keep the jars refrigerated, but not too cold. (See Ref.14,15,23,24,25, on page 9).

Acidophilus/bifidus can re-populate the large intestine, with good bacteria, after antibiotics &/or steroids, etc. have killed off these good bacteria! Some of us have to continue eating the acidophilus/bifidus (daily, or from time to time), but the results seem worth the effort to us.

Yogurt and buttermilk contain similar beneficial bacteria, but are milk products, so see (11) below about milk products.

(10) We use DIGESTIVE ENZYMES. My husband likes Acid-Ease by Prevail, which contains Slippery Elm (inner bark), Marshmallow Root, Gamma-Oryzanol (from Rice Bran Oil), and the plant enzymes Amylase (digests starch), Lipase II (digests fat), and Cellulase I (digests cellulose from plant cell walls). The Acid-Ease does not contain Protease, which can be very irritating to ulcer/GER folks.

The Acid-Ease is NOT an acid blocker. It is not an antacid. It soothes, coats, nourishes, and promotes healing. Its enzymes help with leaky gut syndrome.

   I use Total Enzymes (which does have Protease, a protein digesting enzyme) by Nutri-West, a company that sells only to health practitioners (Chiropracters, Physicians, and others). One could ask their physician to order, at cost, for them, by having physician call 1-307-358-5066.

   Digestive enzymes are NOT FOR EVERYBODY.

(11)  My husband has found that AVOIDING MILK PRODUCTS helps him feel less congested, with less mucous in throat. Milk and milk products can cause gastric reflux episodes. Brown-Rice Milk (look for gluten-free) can substitute for milk (but not for babies!).

Gluten is in wheat, rye, oats, barley, & buckwheat. Read labels to avoid hidden gluten, in some soy sauces, gravies, grain alcohols, beer (barley malt), etc. People with Celiac Disease need to avoid all foods containing gluten. BROWN RICE (organic) is gluten-free. Corn is gluten free, but is very allergenic (allergy causing), so avoid corn. Avoid millet, because there is disagreement about whether millet is safe or not, for Celiac patients.

MILK MAY CAUSE MORE ACID to be produced, IN THE STOMACH.

I occasionally eat milk products, like yogurt, cheese, whipped cream, or my ACIDOPHILUS/BIFIDUS, which is mixed with goat milk powder. So, at these times, I take LACTASE ENZYMES, to digest (break down into easily absorbed small molecules) the milk-sugar called LACTOSE. Many people (due to heredity &/or disease) have Lactose intolerance, where one’s small intestine does not secrete the lactase enzyme. Result is that the milk-sugar (lactose) travels further down the small intestine than it should. Then, bad bacteria eat the lactose, giving off lots of gas (a by-product of the digestion of bad bacteria), and this causes folks to get bloated, gassy, have diarrhea, and cramping. I use Lactaid” brand lactase enzymes, and it works for me. Ordering direct from them can save money.

(12) Using the above methods has almost completely freed my husband of needing to use Tums, and seems to be nicely controlling his and my GER/LPR. We have never used acid blockers.

ACID BLOCKERS CAN HAVE DANGEROUS SIDE EFFECTS: Some examples are:

Acid must be present in the stomach, in order for the stomach to make a substance called Intrinsic Factor. Intrinsic factor must be present with Vitamin B 12, in the duodenum (first part of the small intestine), for absorption of Vitamin B 12 to happen.

Acid blockers therefore prevent absorption of Vitamin B 12. Malabsorption (lack of absorption) of Vitamin B 12, causes NERVE DAMAGE (pain, numbness, pins & needles sensation, etc.) in the peripheral nerves (outside the brain & spinal cord). This is called PERIPHERAL NEUROPATHY. For details about this problem, see the Peripheral Neuropathy forum at http://www.braintalk.org

If Vitamin B 12 continues to NOT be absorbed, eventually there can be NERVE DAMAGE to the Central nervous system (brain & spinal cord).

ALSO, the minerals calcium, iron, zinc, other minerals, and important trace minerals, etc. cannot be properly absorbed, when there is no acid in the stomach (due to acid blockers, etc.).

AND, protein does not get properly digested (broken down--eventually into amino acids), in the stomach, when there is no acid in the stomach.

Doctors and pharmacists can advise about tapering down (weaning) schedules (when and if safe) for the acid blockers. Some acid blockers, when stopped too quickly, can cause rebound acid secretion in the stomach, resulting in excess hydrochloric acid secretion.

ALSO, SOME FORMS OF REFLUX ARE NOT ACID REFLUX, but are ALKALINE REFLUX, (bile is alkaline). Besides refluxed stomach acid (HCl/hydrochloric acid), Pepsin (an acidic proteolytic/protein digesting, enzyme) & bile (alkaline) can irritate & damage: the esophagus, throat, vocal cords, & lungs.

(13) Do not drink ICY COLD DRINKS, and AVOID VERY HOT DRINKS. Use room temperature drinks, or slightly cool, or warm, but not ultra-hot. Extremely cold or hot liquids can irritate the stomach, which is bad for ulcers &/or gastric reflux.

(14) Ask physical therapists, chiropractors, osteopaths, etc. if they know any safe adjustments that might lessen GER/LPR, if you wish.

(15) Read (by Dr. James A. Koufman) PATIENT INFORMATION SHEET ON REFLUX by Center for Voice Disorders of Wake Forest University. Here’s a link:  http://www.bgsm.edu/voice/pt_info.html  Dr. Koufman was a pioneer in showing the connection between stomach reflux (can be acid reflux OR alkaline reflux) and breathing problems!

(16) Some have found a special (large) GERD pillow helpful for preventing GERD episodes while sleeping and while lying down. Here is a link to the Prop up pillow website:  http://www.propuppillow.com

(17) Avoid harmful chemical air pollution, which can aggravate gastric reflux. See page 5 of VCD website for more about this.

(18) Using the above methods, in addition to the SINUS SURVIVAL tips, has helped us to prevent VCD attacks, in us.

(19) Please check with your doctor, in advance, to be sure that it is OK for you to try these tips, in your particular case. Also, please get monitored by your doctor, to be sure that no more damage to the throat, esophagus, stomach, vocal cords, lungs, etc. is happening, from possible SILENT gastric reflux.

Pregnant or nursing ladies should check with their doctors, before trying any of these tips.

Avoid any herbs, foods, etc. that you may be allergic to.

Check with your doctor and pharmacist, to be sure that there would be no harmful interactions between any of your medications, diet that you may be on, and any herbs, foods, etc. mentioned in these tips.

Check with your doctor, to be sure that these tips would not interact badly with any medical condition you may have.

These tips help my husband and me (adults). Some of these tips may be OK for children, and others may not be OK for children. Check with your doctor! Babies with gastric reflux need DIFFERENT treatments, not these tips (except for raising the head end of the crib, if your doctor says it is OK to do this, etc.). Check with your doctor!

Hope this helps.

Sincerely, Concerned lady

http://cantbreathesuspectvcd.com

[Dmarch]

I would just like to tell you that I was diagnosed w/ IBS in the 1st grade and am now 31.  I have seen every dr. imaginable and told about 10 thousand different things.  Finally a year and a half ago I had a dr. that suggested I take 1 gram per day of colestid.  It has been a miracle drug.  I do not have any more problems w/ horrible diareah, terrible stomach pains or any other symtoms associated w/ IBS.  Have your dr. prescribe it for your son, it will change his life.  

dmarch

[nycagnes]

My son whos is 14 years old has the same symptoms.  He has had thee smptoms for the past 3 months and has los a total of 17lbs.  He is 5'5" nd weighs now 112lbs.  He has also had numerous tests. In 2 weeks he is scheduled for an upper endoscopy.  When had a GI series done they found small inflamtion in his duodenum.  My son was also tested for giardia and cyclospora, which are parasites that live in the small intestine.  Was your son tested for that?  We hope that the endoscopy  will find the answer for us.  This has been a very aggravating time for our family.  Iknow what you are going through.  Oh also it is very hard to find these parasites in the stool.  His stool which has been tested 6 different time came back normal.  That is why they will do a biopsy.